Palliative care for Parkinson’s disease:Patient and carer’s perspectives explored through qualitative interview

Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research withhealthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Somehealthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views ofpeople with Parkinson’s disease and their carers about palliative care.Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) toexamine perceptions about/understanding of palliative care.Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), acrossthree Movement Disorder Clinics in the Republic of Ireland.Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the roleof palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a highillness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later,with advancing illness. Participants wanted more information about palliative care and especially further supports to address theirpsychosocial needs.Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced bypeople with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care.Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.